Proactive

I can't remember a single time in my entire life that I've had to be proactive about anything serious.

Things have repeatedly worked themselves out.  I've had people ahead of me work out the details.  Trauma has eluded me.

But now I'm the adult.

I'm the parent of a little boy with a broken heart that needs me to step out of my comfort zone and seek services, alternatives, a better outcome.  I have no clue what I'm doing and think I'm probably about to step on a lot of people's toes, but I guess that's what being a parent is about sometimes.

I've shared a few times that Gabe hasn't been given great odds for long term survival.

His heart is too healthy for immediate action but too sick for anything lasting.  We've been given the sole option of waiting.  Waiting for sickness, for suffering, for his heart to literally stop working.

While I love his cardiologist, she is not giving us any options other then transplant and I've decided that's not good enough.

In the past couple of weeks, new developments have been made in the treatment of HLHS.  Gabe may not be a candidate for these procedures, but it has sparked a new passion in me to keep looking.  I can't settle in and wait for his heart to start dying.

After doing a ton of research and talking to quite a few other Heart Moms, I've decided to send all Gabe's information to the children's hospital in Boston.  After reviewing his charts, we will most likely hop on a plane for further testing in Boston.

It's my hope that getting other opinions might offer up some different options.

A little more hope.